Oh boy, this is a delicate topic. It adds an additional layer to an already complex situation of being caregiver to a spouse. I feel like I'm living with a stranger, not the person I originally fell in love with. Most of the reasons I fell in love with him have been ravaged by the disease. Any advice is welcome.
If one is mentally alert but an illness has taken a lot out of the person, please be careful what you say to your spouse/sig other. They are oversensitive to their own situation, and it is so easy to take what someone said out of context. And hurtful things can last a lifetime :(
If you look at it as being your wifely duty? I don't think it will take long to feel resentful. You're ALREADY during sooo much more than your "wifely duty" that I'm surprised you and dozens of others on this site, haven't grown angel wings.
We are not super human. We do the best we can...
Now, the only thing to do is what you feel is best. I would say that if your loved one is completely oriented but their are other physical issues that make intimacy undesireable, than you need to be upfront and honest about that .
When I met with him a few weeks ago he wanted to talk to me about his relationship with his wife. He told me that he'd like to kiss her but she always turns away and he couldn't understand why. Now, this is a man who is very intelligent. No dementia whatsoever. He's very aware of how difficult it is to care for him and when his aides aren't there his wife cares for him. And when he expressed confusion to me as to why his wife didn't want to kiss him anymore I couldn't bring myself to express to him that it was because she has to clean him up after he has a bowel movement and has had to do so for years. They've been married 12 years so it's not like they have a lifetime of memories and tons of kids together. I would think it would be very difficult to maintain sexual feelings for someone when you have to care for them and their body around the clock.
Another example: the wife of a friend of mine sustained a serious brain injury. She never recovered and is totally dependent upon my friend for all of her care. She wants to have sex with her husband (my friend) but he can't do it. She has a catheter and is obviously mentally impaired but she becomes angry at him when he turns her down. She doesn't bring it up often but when she does he always does something special for her instead, like a movie night. They were legally separated when she sustained her injury and he never divorced her once she was hurt because she would have been made a ward of the state. Now he's caring for his elderly parents and his wife. If that doesn't take away any sexual impulse one may have I don't know what will.
How you feel is understandable. You can satisfy your husband's need for physical intimacy with holding his hand or sitting with him on the couch. But I don't think there is anything you can do go back to what you once had with your husband sexually. But that doesn't mean you have to stop making a connection with him.
This is a good topic, not talked about enough, and I'm glad you brought it up.
How each couple deals with this must suit the individual situation, and it may change as the disease progresses.
All I can say with certainty and from personal experience, is that Mimijazz you are not alone in your confusion about sexual intimacy with a "stranger." It is painful when the love of your life changes so dramatically.